SPG 4 Denovo

Resources for Families Living with SPG4

Welcome. If you’ve just arrived here, you may feel overwhelmed, uncertain, or even lost. You are not alone. Spg4together.org was created by families, for families – to share knowledge, hope, and community around Hereditary Spastic Paraplegia, SPG4.

This page is your starting point. Below you will find guides, links, and stories to help you begin navigating this journey.

Understanding SPG4

What is SPG4 and what does De Novo mean?

Trusted Resources

• Cure SPG4 Foundation Home | Cure SPG4
• Gene Reviews – SPG4 Spastic Paraplegia 4 – GeneReviews® – NCBI Bookshelf

Therapies and Daily Life

• Physical & Occupational Therapy – movement, strength, adaptive play
• Speech Therapy – communication and swallowing
• Assistive Tools – walkers, wheelchairs, FES bikes, exoskeletons
• Practical Life Tips – school supports, adaptive sports, everyday adjustments

Research and Hope

We post updates here as new studies and advances appear – check back often. We are tracking:

• Gene Therapy
• Drug Repurposing Efforts
• Biomarker Development and Clinical Trials

Community & Support

Join Us – Sign up for updates and connect with other families.

Find Community / Advocacy Partners

• The Lilly and Blair Foundation
• Spastic Paraplegia Foundation – Hereditary Spastic Paraplegia & Primary Lateral SclerosisF
• SP-CERN – The Spastic Paraplegia – Centers for Excellence Research Network

Meet Our Daughter

Support